Needless suffering could be avoided if chronic pain were recognised as a fifth
'vital sign’

When Tricia King gets up, she doesn’t wash her face with a flannel. Instead, she uses the lightest of water sprays, lets her face air-dry and then applies a spray moisturiser. She has rarely touched the right side of her face in five years.

The retired mother of two from Winchester, Hampshire, is careful never to turn her head swiftly unless absolutely necessary. She wears dark glasses to protect against bright light. When out of the house, she is always alert to potential loud noises such as a child screaming.

Any of these irritants – the lightest touch, a rapid movement of the head, bright light, sudden noises – can trigger an attack of terrible facial pain that no amount of painkillers, even morphine administered intravenously, can soothe. Tricia suffers from trigeminal neuralgia (TN), a form of chronic pain, which is triggered by the trigeminal nerve in the face. ''It is excruciating, unbelievable pain,’’ she says.

Tricia is one of more than 7.8 million people in the UK with chronic pain, an umbrella term that covers specific pain-related disorders such as TN (a relatively rare condition, diagnosed in about 5,000 Britons, with almost twice as many women as men affected, usually over the age of 40) and fibromyalgia (pain felt all over the body), but also those with conditions such as intractable back problems, arthritis, post-op and post-cancer therapy pain, and those who suffer trauma after accidents.

Yet despite the amount of suffering it causes, there is little recognition that ''pain’’, as a condition in its own right, requires careful assessment and therapy like any other disorder. Now a coalition of patients, professionals and charities are campaigning for national guidelines to be developed for the prevention, treatment and management of chronic pain. In particular, they argue that pain be recognised as the fifth ''vital sign’’.

Currently, doctors use four “vital signs” – body temperature, pulse, blood pressure and respiratory rate – to assess a patient’s general health. Dr Beverly Collett, a leading pain specialist, argues that if pain were routinely assessed with the same priority as other vital signs, a great deal of unnecessary suffering, stress and anxiety could be avoided.

Dr Collett, a consultant in Pain Medicine at the University Hospitals of Leicester, chairs the Chronic Pain Policy Coalition (CPPC), which last month presented its latest report to an all-party parliamentary group on chronic pain at the House of Commons.

''There is no Nice [National Institute for Health and Clinical Excellence] guidance or quality standards for the treatment of chronic pain, and pain treatment varies hugely in different regions of the NHS,’’ says Dr Collett. She warns that the new GP-led commissioning, with priorities set locally, will add to the problems ''due to a lack of integrated care, and no national standards being laid down’’.

The Coalition wants to see GPs use formal pain assessment tools [such as a standardised pain questionnaire] to help them decide what treatment is needed. Moreover, says Dr Collete: ''Patients should have access to dedicated pain clinics, where they can see multiple pain specialists from doctors and nurses to psychologists, physiotherapists and occupational health workers.’’

Currently, that kind of access is not always available: according to the Coalition, of the 152 primary care trusts in England and Wales, 28 have no pain management clinics.

Strong painkillers worth £584 million are prescribed in the UK every year. Among the most common are codeine-based analgesics, anticonvulsants (which are thought to disrupt nerve messages) and amitriptyline. an antidepressant which also decreases TN pain. But adds Dr Collett: ''Medication alone doesn’t always take the pain away, and it has side effects.’’

This has certainly been true for Tricia King. Her TN developed in 2007, after a bad fall in which she hit her head, just after she had started studying for a criminology degree at the University of Lincoln. ''Ten days later, I woke in the night with excruciating facial pain. It was so traumatic, I found myself sitting upright in bed, and throwing my body forward and screaming.

''In hospital, one of the doctors held my hand and said: 'You have trigeminal neuralgia. This is a difficult thing to cope with.’ I was devastated.’’ She was shocked to learn that TN is incurable and unpredictable, relapsing and remitting without warning.

The trigeminal nerve is one of 12 cranial nerves that send messages to the brain telling it if the face has been touched (however gently) or hurt. The nerve wraps round the back of the head – from the brain stem – and spreads out in branches across the face. But when TN develops, this nerve malfunctions, sending disproportionate messages to the brain so that the lightest touch can feel like a punch. Why this happens is not always known, but compression of the nerve can develop after a trauma to the head or face.

''I might touch my face 90 times and feel no pain,’’ says Tricia. ''The next time, it could cause a quick stab or a longer lasting pain.’’ She describes it as an electric feeling – ''like a lightning bolt through your face, causing pain in the right cheek and in the right eye’’.

Eventually, Tricia found that a drug called phenytoin helped ease the pain. Even so, the past five years have not been easy. ''It can be exhausting. Not just coping with pain, but smiling in public, remembering to take medication regularly – always feeling you have to be doing something to get on top of it. And if you live alone, as I do, you are both your own patient and carer.’’

Because chronic pain is invisible, Dr Collett says: ''It is difficult to understand the significant impact it has on people’s lives.’’ In particular, the unpredictable ebb and flow of pain makes it hard for sufferers to hold down a job, with figures indicating that 25 per cent of those affected are forced to give up work.

For Dr Collett, change cannot come swiftly enough: 'We need to go forward quickly with nationally agreed clinical guidelines for commissioning services to diagnose and manage those with problematic pain.’’ She also wants to see diagnoses sped up: while Tricia’s TN was picked up immediately, most chronic pain takes nearly three years to identify.

There is also a move towards increased self-management. Pete Moore, from Essex, who has suffered chronic arthritic pain for more than 20 years in his back, feet and hands, changed his approach in 2000 after attending the pioneering pain clinic at St Thomas’s Hospital, London. He says: ''I was, like many pain patients, looking for a magic bullet to take away the pain.”

After attending a pain management course, he has written books, led courses and lectured on the topic. He has also produced a book and a website – the Pain Toolkit (paintoolkit.org), which helps patients ''move back to being people’’.

Tricia King continued with her criminology course; she says her pain episodes are under control, as long as she avoids triggers such as touch, noise and bright light. Good information and support have been invaluable, she says: ''I’ve only got through these TN years with the help of the Trigeminal Neuralgia Association UK (TNA UK).’’

For anyone diagnosed with a chronic pain condition, she suggests: ''It takes time to accept that you will have to deal with pain in the future, but acceptance helps you to move on.’’

Dr Collett adds some further advice: ''Don’t catastrophise. Don’t think about how you will feel in 10 years’ time. Deal with your pain bit by bit.’’